Saturday, July 12, 2008

We went to the zoo this morning. We tried to get there early before the humidity got bad, but it was still pretty miserable. Connie did well, but was thoroughly disinterested in the animals for the most part. The water bottle he was drinking from was way cooler. Here are a couple of pics we took today.

Tuesday, July 8, 2008

Connie's OT came this morning and he showed off by eating diced green beans, diced pears, several bites of chewy peanut butter granola bar, 6 oz of a yogurt smoothie, 1.25 oz of pureed chicken and 1 jar of pureed soup. He pretty much eats anything you give him and is handling it all very well. If he puts too much in he'll spit some out, but for the most part is not gagging much, if at all, anymore. Over the past couple of weeks he's eaten things like drumstick ice cream cones, cupcakes with icing, cookies, rice, refried beans, guacamole, salsa, nutrigrain bars, crackers, tortilla chips, dum dum lollipops and fitz's strawberry soda. Everything in moderation, right? Seriously, we've been at lots of parties and celebrations so he's gotten to sample lots of things just so we could kind of see what he'd do with them. Very encouraging. Ms. Carla is even talking about not needing to come much anymore and by the fall he'll either be on monthly visits or no visits at all! Same with Ms. Jenni, the dietician. She came today too and his weight is up almost 2 lbs. in less than a month. He's perfectly proportioned, in the 50%ile for height, weight, weight for age and weight for height. Looking at him and at Mary Kathleen, I think he's the size he would be if he didn't have a heart condition and a year like he has had. His new weight is 24 lbs. 9.6 oz. Yay, Connie!

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention.In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old.He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.